Day +91, Tuesday

Photo of the Day: I’ve never had cream cheese without dairy, and it was surprisingly good. And dairy-like. When Andy asked how the brand was spelled, I replied, “Too-F-U-Tii.” Technically I wasn’t wrong and we both laughed.

I wouldn’t normally post dairy-less cream cheese as my photo of the day, but it was part of the best dinner I’ve ever made. Granted, since leaving the hospital I’ve mostly consumed buttered noodles and Parmesan, but lately my taste buds have become restless. So today, Mom bought Garlic Parsley Fettuccini and lucky for us, the packaging came with a handy recipe on the back. We mostly followed it and the final combination of fettuccini and cream cheese mixed with a delicious concoction of baked cherry tomatoes, fresh basil, olive oil and garlic was, simply stated, marvelous.

We then watched “Designated Survivor” and stayed up way too late. Oh well.

I was overall quite pleased with today. I started off at the Dental Clinic, having my teeth, gums, salivary glands and mouth checked and compared to my pre-transplant/baseline results. In the 3 months since my Stem Cell Transplant, my mouth in general has changed, most notably with a lack of saliva. Yes, my salivary glands continue to work, but at a much diminished output. In turn, this leads to dry mouth, which can cause complications including inflamed gums, a receding gum line and tooth decay (to name a few) – all of which I’m experiencing.

And really, my mouth isn’t bad – I’m fortunate to have the good family genes on this front. My gums are only slightly inflamed, and the enamel on two of my teeth happens to be thinning. So my dentist prescribed a toothpaste called “PreviDent Gel”, essentially a fluoride toothpaste, which I’ll use daily after my normal brushing routine. I was also prescribed an oral mouth-wetting medication, so I’ll give that a go as well. To be continued on the Dental front; I follow-up with them in 3 months.

Something even more exciting, is that my Team called in Cipro to treat my suspected UTI. My poor body has been fighting this thing for 10, or 11 days at this point – and it’s just a miserable feeling. My understanding from Erin and Daniele is that all 3 urine samples I gave have every marker for a UTI, except for the presence of “bad” bacteria. And to be fair, these markers could also indicate the presence of BK Virus (which according to the results on Monday, my BK Virus markers are elevated which indicates virus replication).

But I was just desperate; what I’ve been dealing with does NOT feel like BK – it feels more acute, crampy, painful. On Monday, Erin mentioned that the Infectious Disease doctors wanted to see how my culture developed before recommending antibiotics. Today, I was thankful that Erin tossed that idea out the window. If it turns out not to be a UTI, well, at least we tried. And if the antibiotic works – then I won’t be in pain. That sounds pretty good about now.

Sometimes it’s frustrating. I understand that virtually all aspects of my body are being tracked, measured, compiled, charted, recorded, analyzed, etc. It’s the deal that I made when I agreed to a Stem Cell Transplant at the NIH – I’m a person, yes, but I’m also a research subject in a clinical study. When I’m uncomfortable and in pain, it’s easier to be frustrated and feel as though I’m just a number on a spreadsheet, rather than a real person with feelings, etc. I know this is far from true, but pain – especially being in pain over a long period of time – is exhausting. And it adds up, all of those little things that, on their own don’t seem to be that big of a deal, but when combined feel insurmountable.

Over the past few days, the BK Virust/UTI has been building, but so too has my face discomfort, rash on my shoulders and chest, itchy & dry skin, lymphedema in my lower right leg, and the night before last – I threw up my Pho. And I miss Andy, and the kitties. Sometimes I just want a break.

Anyone would.

So I do my best to just take things one day at a time. Its just about all I can do at this point.

Thankfully, the creams and gels for my skin are working, and the discomfort associated with that is diminishing. My lower right leg/lymphedema is still there, but a few days of sleeping in my brace should help. As for the Pho, well – I tried something delicious tonight and it didn’t wreck my GI system…life isn’t all bad. Oh, and a week from Friday, as long as everything remains on track, we drive home to Asheville.

Life is actually pretty awesome.

The rest of the day was solid. We ventured out to Wegman’s in search of Miche, but settled for regular sourdough instead, along with supplies to make our incredible dinner. Traffic returning from Virginia to Bethesda wan’t bad, and we made a final not-too-brief stop at Anthropologie before making our way home. I chatted with Andy, then made dinner and discussed plots and potential outcomes of Designated Survivor with Mom. Life before Netflix was hard, and is it possible to ever be tired of the cliffhangers?

Oh well.

Tomorrow I’m at Walter Reed bright and early for Mohs surgery on my left ear. It’s another milestone in my transplant journey, another day closer to returning home and starting the next phase of my post-transplant life.

Huzzah!

  1. Let’s hope that all goes well with the ear surgery. I’m so sorry that you have to endure so much pain. You are so brave.
    9 days and you will be home with Andy and the kitties. Keep on keeping on!
    ❤️Dad

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  2. I hope the antibiotic brings some relief. I can well understand the frustration of pain and how it makes everything seem difficult. What a challenge! But you continue to amaze me with your day-at-at-a-time approach. Best wishes as you go through the Mohs procedure today. I’ll be thinking of you.

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